I attended the annual dinner of the Schwartz Center for Compassionate Healthcare last week. The Schwartz Center is an impressive organization housed at Massachusetts General Hospital that is dedicated to strengthening the relationships between patients and their treating physicians in order to promote "compassionate care". It was founded by Ken Schwartz, a health care attorney in Boston, as he was fighting a battle with lung cancer. Before his untimely death at age 40, he wrote a moving article in the Boston Globe Magazine called "A Patient's Story" (http://www.theschwartzcenter.org/aboutus/ourstory.aspx) about how the compassionate care he received was as important as the clinical care.
What started as a small group of people dedicated to honoring Ken Schwartz's memory has become a national organization that provides "Schwartz Center Rounds" across the country, on the premise that compassion is not, as one might hope or assume, an innate skill -- at least not for everyone. Rather it is a skill that can be taught -- a skill that can be learned. The Schwartz Center teaches physicians and other caregivers how to care; not medically, but compassionately.
I didn't know Ken Schwartz; he died before I graduated college. But I have known of his organization since I started working in the health law field many years ago. I am awed by its guiding principle, at once both simple and groundbreaking -- if we stop, if we relate, if we really look at others, if we stand for just one moment in their figurative shoes, if we bridge the island of isolation during times of need, we can learn to care. Like anything, even caring can be a conditioned response.
I consider myself somewhat of an expert in conditioned responses. I seem to be particularly wired for them, a modern day Pavlov's dog. When I was pregnant the first time, I was extraordinarily sick to my stomach for considerably longer than the books tell you to "expect". During this time I would drive to and from the commuter ferry that I take to work and it just happened that Ray LaMontagne's CD was in my car's player. Out of sheer laziness on my part the CD would play on a continuous loop. I heard Ray's gritty voice and melancholic strains every day as I stepped out of my car, threw up in the parking lot, and got on the boat. And again when I got off the boat, threw up in the parking lot, and got back in my car. (Looking back I'm not sure a water commute was really the best thing at the time....) To this day, years later, if I hear Ray LaMontagne (if I even think about his music) I could throw up. Not like "Oh my God I could totally throw up right now!" I could ACTUALLY throw up and have come very close before quickly changing the radio channel.
There are many other examples of this I can conjure up. They have taught me that what we sometimes identify as "reaction" or "instinct" or "innate" is really nothing of the sort. Our minds can learn to trigger a specific physical or mental response to certain stimuli (or even to certain thoughts). And better yet (at least with respect to my example), our minds can also un-learn such responses. The conditioned response can be broken as easily as it is forged. Even for Pavlov's dogs, a ringing bell can once again be just a sound.
I look forward to the Schwartz Center dinner because it always honors a specific physician, nurse or other provider who exemplifies compassionate care, and it's wonderful to see who is chosen and hear about the work they do and the ways in which they put compassion first. This year, the dinner not only honored a specific caregiver, it also honored all of the caregivers who helped to heal people following the Boston Marathon, in which I ran. I must have not read the invitation to the dinner closely (or perhaps I simply blocked it out). For whatever reason, it came as a total and utter shock to me when the video started rolling, detailing the specific recovery of one of the marathon bombing victims (Adrianne Haslet, a ballroom dancer who lost half of her leg in the blasts) and honoring the surgeon and other providers who have seen her through this unimaginable ordeal. I'll be honest, I wanted to get up and leave the room but I had already started crying and shaking in response to the images on the screen and did not want to call attention to myself. The video showed the early part of the race, the starting line, the happy excitement of the marathon before the bombs. It also had up close footage of the explosions themselves; images that I quite frankly have not seen (other than a few still photos) since that day. I still have not watched the marathon coverage my husband recorded for me on April 15 while I was running and my family waited for me on Boylston Street. Sitting in that dark ballroom, I felt trapped; forced to watch my DVR against my will, yet simultaneously mesmerized by Ms. Haslet's story and its connection to compassionate caregiving. I felt guilty; if someone so directly and physically impacted by that day can stand before all these people and tell this story, I figured at the very least I should be capable of listening to it. But I was unprepared to say the least.
The specific physician honoree this year described compassion with adjectives such as caring, understanding, and loving. He spoke of the simple power of relating to someone; understanding who they are and what shared experiences help bind you. When I think of compassion (including the compassion that was shown to me on April 15 and the following days, weeks and months), I too think of those individuals who related to me. Of the friends, family, colleagues and even mere acquaintances who had been through similarly traumatic experiences (some even through other terrorist attacks) who reached out immediately to connect with me; to share their stories; to let me know that I am not alone in how I feel; to give me guidance in navigating my post-April 15 world. This was empathetic compassion. I like to think of it as "Connection Compassion". These individuals immediately saw in my experience something to which they could relate, and by sharing their experiences with me they helped me to see a path forward. There have also been others who perhaps could not relate directly to what I was going through, but who nonetheless demonstrated that they cared. People who admitted honestly to me that they really could not understand how I was feeling. That it seemed strange and unfathomable to them that having survived "unharmed" from that day my family would nonetheless still be struggling, months later. People who couldn't understand why I would be conflicted about whether or not to run the race again ("Boston Strong" and all...). The compassion these individuals showed me was in some respects even more impressive because it came without a clear connection; it came in spite of a lack of understanding. Their actions said: "It is not clear to me why you are having a hard time, but it does not matter. I will show you kindness anyway. I will try to make you feel better, simply because you feel down. I don't need you to explain yourself. I care in spite of all of that." I think of this as "Selfless Compassion". It wants and expects nothing in return. It is kindness for kindness' sake. It is relating through our shared humanity, if not through a specific connection.
I wish I could say everyone in the world, including myself, fell into one of those two buckets all of the time. To be clear, I would never judge someone who could not relate to me, particularly with respect to this experience. I would be thankful for them. Before April 15, I don't think I would have been able to relate to me. I would also never judge someone who wonders what on Earth I'm talking about, even after my detailed quasi-scientific explanation of why the brain takes a while to catch-up from believing that something horrible has happened even when it hasn't. I can say with confidence that I had very little understanding of PTSD and the neurobiology of trauma before this event, and I can even remember feeling confused (and, if I'm being honest, uncomfortable) at hearing about others' experiences in this regard. I think most of my reason for writing about this experience and sharing it publicly has been a desire to tell the whole story as I see it; to illuminate in my own way what I believe is the more nuanced reality of coming through such an event, as opposed to the media soundbite. And now having the benefit of this experience, I can only hope (truly, completely, transparently, desperately) that I never make another person feel invalidated because I can't personally relate to or understand what they are going through. My wish for myself--my promise to myself--is that I make caring a conditioned response, even when I am at a loss at how best to help. That I look for a way to relate and show Connection Compassion, or when I cannot relate, and especially where someone's experiences or circumstances ignite fear by forcing me to face the unimaginable, I find it in my heart to show Selfless Compassion anyway. To be kind and caring when I want to turn around and run in the other direction.
I also hope that one day I can watch coverage of the marathon with a smile on my face and Ray LaMontagne playing in the background. Baby steps....
In the meantime, as we approach Thanksgiving, I want to say THANK YOU. Thank you to all of MY compassionate caregivers, near and far. Ken Schwartz had it right -- compassion is central to healing, no matter the outcome of your diagnosis. But it's not only the health care profession that can learn to deliver compassionate care. We are all students of compassion, and we can all try harder to make sure that when given the chance we turn towards, and not away from, caring.
